getting to maybe

wellbehaved

Every so often, I get a fire in my belly that I cannot extinguish.  My guide to to the Revolution is the book Getting to Maybe.

This book is for anyone who has ever thought:  THIS IS NOT OK.  I NEED TO DO SOMETHING.

I re-read my dog-eared version of this book when I lobbied (along with four other families) our local children’s hospital to create a Family Council.  (It worked.  Over four years later, it is going strong).  I referred to Getting to Maybe when the Nurse Coordinator at our Down syndrome clinic was slated to be laid off, and, along with a group of awesome, equally outraged families, we created an advocacy campaign called All Kids Deserve Health Services.  (It worked.  The government reinstated her position).

I’m currently outraged that families who have children with Down syndrome can’t access public speech and language services.  And about the sting of discrimination that people with disabilities experience from our society.

The question is:  what am I going to do about it?  

Getting to Maybe will show me the way.

We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you…and as we let our own light shine, we unconsciously give other people permission to do the same. – Marianne Williamson

6 thoughts on “getting to maybe

  1. Lila Polur Wrubel says:

    Sue–Just stumbled upon your blog. I think you’re my doppelganger: I have 3 kids, my 11 year old has DS and I’m a writer (although not so good getting my butt in the seat!) and perilously close to 50. Thank you for your honesty.

  2. sue robins says:

    Lila, happy to hear from you! I find that this blog REALLY helps with my motivation for writing…it is great to have a platform to pound out my thoughts…and bonus, I have awesome readers that keep me going…but when I first started, my husband was my only reader – it was a super way to get into the habit of writing. Cheers to you!

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